Last week I wrote a blog post about the second part of the eHealth summer school in Stockholm August 21-25. The second day, spent in Uppsala, will focus a lot on patient accessible electronic health records (PAEHRs) and this is one of the reasons why I will link to some of my key posts on the topic here. Most of the information here is closely linked to the DOME consortium, gathering researchers, focusing on different aspects of PAEHRs, from several Swedish universities. At the end I will also reference some important PAEHR initiatives in other countries.
General information about research on PAEHRs in Sweden
In the blog post Seminar about the history of patient accessible electronic health records in Sweden, some of the early history and background to the Swedish PAEHR system in use today, Journalen, is presented. Among other things, I describe the role Uppsala University has played. The post includes a link to a youtube video, where we see Benny Eklund, one of the main drivers behind the PAEHR implementation in Sweden, present some of the barriers and enablers from the early years.
In the blog post A very successful session about patient accessible electronic health records at Vitalis 2017!, you can find a summary of a presentation organized by the DOME consortium at Vitalis in spring 2017. The presentation gives an overview of the current state of the PAEHR system in Sweden as well as some of the latest research.
In the blog post Interviewed on a podcast!, there is a link to a podcast, administered by Södertörn University, where Åsa Cajander and I discuss some of the research conducted within the DOME consortium as well as some future studies. The interview is in Swedish.
Two times a year the DOME researchers gather at one of the universities represented within the consortium. At these meetings, or DOME conferences, we discuss both research and the consortium as such. The posts A week filled with eHealth-related activities! and Some thoughts about the last DOME consortium meeting in Skövde summarize two of these meetings.
About ongoing studies
For the moment, I lead two studies on the effects of PAEHRs. One of them focuses on doctors and nurses and how their work environment is affected by patients being able to access their own medical records online. Another focus in this study is on how the communication between care professionals and patients has been affected. This observation/interview/survey study, as well as the team behind it, is introduced here: The team behind a new large study on electronic health records in Sweden.
The other study focuses on the patients and their use of and attitudes towards the Swedish PAEHR system Journalen. This large national survey study, as well as the team behind it, is presented here: The team behind a new large patient survey on electronic health records in Sweden!.
Blog posts and research from the patient’s perspective
Since I’m not only an eHealth researcher but also a patient suffering from a chronic rheumatical disease, I have also written a few reflections on the Swedish PAEHR system from the patient’s perspective. I e.g. wrote this blog post after I had been able to see test results in my PAEHR for the first time: Now I can see new test results in my online electronic health record!.
I have also acted as a patient in some conferences. One example of this was a workshop in Oslo, which focused on if electronic access to the health record really was a service for all. Apart from being one of the organizers, I also played the patient in a role play activity. You can read more about this here: Organized a workshop in Oslo!.
Up until today, I have only written one research paper from a patient’s perspective – a workshop paper where I tried to make a case for easily accessible electronic health records. You can read about that contribution, and the very interesting critical incidents workshop, here: My first workshop contribution from a patient’s perspective! .
PAEHRs in other countries
Sweden is far from the only country where the citizens can make use of a PAEHR system. One of the most known, where patients are invited to read clinical notes, is OpenNotes in the USA. The OpenNotes movement really seems to be a success story, appreciated by both care professionals and patients. You can read more about OpenNotes here and you can also follow @myopennotes on Twitter. Another example, which also seems to be one of the success stories regarding PAEHRs, is myUHN Patient Portal in Canada. Their system is similar to the Swedish system and you can read about it here. You can also follow @myUHNPortal on Twitter.